New registry will help researchers find better
treatments and cures
FAIRFIELD, N.J., July 9, 2024
/PRNewswire/ -- American Liver Foundation (ALF) announced the
first-ever patient registry for all types of liver disease. The
American Liver Foundation Patient Registry will help provide
researchers with a better understanding of liver diseases, the
impact of current treatments, and how liver disease affects
patients. The new patient registry has a user-friendly platform
powered by Empiramed™, an observational data research company that
focuses on registry data through the PRO Portal™ and is available
at liverpatientregistry.org.
American Liver Foundation (ALF) announced
the first-ever patient registry for all types of liver
disease.
"There are more than 100 different types of liver disease, and
it is imperative that researchers have access to information from
the patient's perspective to help discover better treatments and
cures," said Lorraine Stiehl, CEO,
American Liver Foundation. "Until now, there has not been one
central place where researchers interested in liver disease can
access information on a patient's disease history and more
importantly, how patients are managing their disease and its
often-debilitating symptoms and comorbidities such as diabetes,
heart disease and obesity."
"As someone who has devoted my career to research and helping
patients live better lives, it is my hope that the new American
Liver Foundation Patient Registry will spur a renewed interest in
liver disease research, especially in areas that have been without
any new advances or treatments for years, such as autoimmune and
rare liver diseases," said Emmanuel
Thomas, MD, PhD, FAASLD, ALF Board Chair and Associate
Professor at University of Miami School
of Medicine and member of the Sylvester Comprehensive Cancer Center
and the Schiff Center for Liver Diseases at University of Miami.
The new American Liver Foundation Patient Registry is open to
adults 18 years and older in the United
States with any type of liver disease and at any stage,
including transplant. Participation is easy and includes an online
survey with questions about a patient's history of liver
disease(s), how a patient has managed or treated their disease and
its symptoms, other medical conditions or lifestyle issues that may
be relevant to their liver disease journey, and some basic patient
information. Patients may also be eligible to participate in
additional research activities once they have completed the initial
survey.
"Throughout the development of the American Liver Foundation
Patient Registry, we have strived to make the process as simple and
user-friendly as possible for patients," said Helene Jordan, PhD, National Senior Director,
Research Program Management, who led the creation of the registry
along with a group of researchers and medical experts. "Our goal is
to make a difference in liver disease research and help researchers
carve out new and exciting pathways to discover better treatments
and cures. We are thrilled to give patients the opportunity to help
change the face of liver disease for future generations by sharing
how their liver disease affects them. We also anticipate that the
American Liver Foundation Patient Registry will be a useful tool
for patients to learn more about their disease. We hope all adults
at any stage of liver disease, including transplant recipients,
will consider participating."
To learn more about the American Liver Foundation Patient
Registry visit patientregistry.liverfoundation.org or sign-up
directly at liverpatientregistry.org.
About the American Liver Foundation
American Liver
Foundation (ALF) is a national community of patients, caregivers
and medical professionals dedicated to helping people improve their
liver health. Providing guidance and life-saving resources, we are
a beacon for the 100 million Americans affected by liver disease.
We advocate for patients and families, fund medical research and
educate the public about liver wellness and disease prevention. We
bring people together through our educational programs and events
and create a network of support that lasts a lifetime. ALF is the
largest organization focused on all liver diseases and the trusted
voice for patients and families living with liver disease. For more
information visit www.liverfoundation.org or call: 1 800 GO LIVER
(800-465-4837).
Contact: Julie
Kimbrough
JKimbrough@liverfoundation.org
Direct dial: 646-737-9409
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SOURCE American Liver Foundation